I'm new here!

weberdns
weberdns Member Posts: 154
edited March 2014 in Thyroid Cancer #1
I'm new here and still trying to muddle through this whole thing. As an intro I should tell you that I am 49 years old and a Registered Nurse. I worked my first 5 years of nursing in Oncology in the 80's. This can be both a blessing and a curse as I have seen just about everything.

In Mid January when seeing my PCP for sinus infection and a blood pressure check he stopped writing and looked at me funny and told me that the left side of my neck looked slightly larger than the right. I was sent for an ultrasound. which showe a 2.2x1.0x1.3 nodule on the left mid inferior part of the Thyroid.

Fine needle biopsy showed Oncocytic Herthle Cell Neoplasm, colloids, and inflammatory cells.

March 4'th I had the left side of my Thyroid removed. I haven't seen the official report but was told by my surgeon that it showed Well Differentiated Follicular Cell Carcinoma of the Thyroid.

March 12'th I was back in to have the right side of the thyroid removed. Was also told that there was 1 lymph node involved with the first biopsy. Now still waiting for the second biopsy result. See my surgeon on Monday. Supposed to meet with my endocrinologist on the 26'th. Radioactive iodine in 6 weeks. Still not sure when a scan will be done to determine mets throughout the body. (can anyone tell me???)

I have a 14 year old daughter, and a 19 year old son along with a supportive husband of 23 years. All however hear that Thyroid Cancer is highly curable and are dealing with it as I get the treatments and all will be well. I just feel such a loss of control, fear, and fatigue. Sometimes I cry, sometimes I just crawl in bed, and sometimes I want to do more....but pay later. I'm on Cytomel twice a day and 1000 mg of calcium 3 times a day.

Just wanted to say hi, that I am here, and get comments from anyone that I can!

Comments

  • sandykr
    sandykr Member Posts: 57
    #2
    Welcome
    My story is similar to yours and I am now 3 months post RAI. My picture is my first 10K I ran 2 months post surgery! ( a personal triumph)
    The full body scan is usually done one week after the RAI when you still have enough radioactivity (is that a word?) in your body to do the scan, yet you are not dangerous to others.
    I too was on cynomel until I went hypo before the RAI, this can play with your energy and your emotions but just think of it as temporary (My TSH went up to 133). Read lots of books and rest during your isolation. I started on eltroxin 3 days after the RAI and am pleased to report no problems. I feel like my energy levels have returned to pre surgery levels.

    I think that our kids take their cues from us........if we are able to deal with our situation........they too will be able to.

    Good luck
  • dubby88
    dubby88 Member Posts: 15
    #3
    Welcome
    You will find alot of good people here and they will help you. I've only been here a short time myself. I go to my endocrinologist tomorrow for my post op. I dont know yet if I have to have this RAI or not they got mine early it was small and they took my whole thyroid out on the 12 of Feb.

    I know how you feel I went to my primary doctor because I had another UTI for the hundred time, and she told me I had to expect to be on a roller coaster for a while until they get my meds right. I want to cry alot of times, but people say they removed it all why worry!! Well it my body and I do worry.
    I'm 61 years old and I would like to see my youngest grandchildren grow up, they are 2 1/2 year old twin girls.
    Anyway i'm in one of my moods right now sorry.

    Donna
  • tonesgurl
    tonesgurl Member Posts: 42
    #4
    Hey There
    Hey there and welcome to a place that will listen to your rants and complaints, a place that will offer you much needed support from people who have either gone through it already or will soon, a place that has people just like you. That is what I found when I joined this site! No one can really relate to what I am going through better than someone who is in the same situation. I had my TT in July 09, Radiation of 163 millicuries in Nov 09. I have multifocal papillary carcinoma. I was told that I will have to have the radiation at least one more time perhaps even a third time.....Oh the joys of cancer!

    I have had other health issues transpire since being diagnosed with cancer.......a trickle effect I suppose ;) Dealing with one day at a time and today seems to be an emotional one! I have gained quite a bit of weight and I am not too happy about that not because of outter appearance but not comfortable in my own skin right now. The Endo said this may happen but now that it has:(

    Hope to talk with you again and updates on your journey.

    Your New Friend
    Adrian
  • YolieC09
    YolieC09 Member Posts: 5
    #5
    dubby88 said:

    Welcome
    You will find alot of good people here and they will help you. I've only been here a short time myself. I go to my endocrinologist tomorrow for my post op. I dont know yet if I have to have this RAI or not they got mine early it was small and they took my whole thyroid out on the 12 of Feb.

    I know how you feel I went to my primary doctor because I had another UTI for the hundred time, and she told me I had to expect to be on a roller coaster for a while until they get my meds right. I want to cry alot of times, but people say they removed it all why worry!! Well it my body and I do worry.
    I'm 61 years old and I would like to see my youngest grandchildren grow up, they are 2 1/2 year old twin girls.
    Anyway i'm in one of my moods right now sorry.

    Donna

    Hi there...I was wondering
    Hi there...I was wondering if you are hoarse from your surgery. I had mine removed 1/14/10 and I still have not regained my normal voice. I go tomorrow to take the RAI pill. Like you you my tumor was small and no lymp nodes were involved (I hope)..The surgeon wanted the RAI done just to make sure everything possible is being done. I am 62 and when I was told I had cancer, I was in shock. The doctor assures me that I will live a very long time. It took me a little while to get through the emotional part. Every once in a while when I am taking a shower the water works (tears) start. However, I start to think of my boss. She has lung cancer and in the 8 years since being diagnosed she has maybe had a year where she has had not to do chemo. So when I start to feel sorry for myself I think of her. Yes I have cancer but thank God I do not need chemo or radiation. Hang in there...It is also nice to know you have others in the same boat with you at least for me it is.
  • weberdns
    weberdns Member Posts: 154
    #6
    sandykr said:

    Welcome
    My story is similar to yours and I am now 3 months post RAI. My picture is my first 10K I ran 2 months post surgery! ( a personal triumph)
    The full body scan is usually done one week after the RAI when you still have enough radioactivity (is that a word?) in your body to do the scan, yet you are not dangerous to others.
    I too was on cynomel until I went hypo before the RAI, this can play with your energy and your emotions but just think of it as temporary (My TSH went up to 133). Read lots of books and rest during your isolation. I started on eltroxin 3 days after the RAI and am pleased to report no problems. I feel like my energy levels have returned to pre surgery levels.

    I think that our kids take their cues from us........if we are able to deal with our situation........they too will be able to.

    Good luck

    Thanks for the welcome!
    I must say I find your running and your attitude amazing!! I'm still trying to find my way through this fog and since I don't have all the answers yet I'm still anxious! It seems the more that I know the better I become. Thanks for the welcome and the encouragement!
  • weberdns
    weberdns Member Posts: 154
    #7
    dubby88 said:

    Welcome
    You will find alot of good people here and they will help you. I've only been here a short time myself. I go to my endocrinologist tomorrow for my post op. I dont know yet if I have to have this RAI or not they got mine early it was small and they took my whole thyroid out on the 12 of Feb.

    I know how you feel I went to my primary doctor because I had another UTI for the hundred time, and she told me I had to expect to be on a roller coaster for a while until they get my meds right. I want to cry alot of times, but people say they removed it all why worry!! Well it my body and I do worry.
    I'm 61 years old and I would like to see my youngest grandchildren grow up, they are 2 1/2 year old twin girls.
    Anyway i'm in one of my moods right now sorry.

    Donna

    Thank you for for the welcome!
    Thanks for theh welcome and the encouragement! I do know so far that 1 lymph node is involved....and am a bit scared to get this next report and have the body scan as it seems each time I get new information it goes from "it is probably nothing" to it's something and now we have to do X.
  • weberdns
    weberdns Member Posts: 154
    #8
    tonesgurl said:

    Hey There
    Hey there and welcome to a place that will listen to your rants and complaints, a place that will offer you much needed support from people who have either gone through it already or will soon, a place that has people just like you. That is what I found when I joined this site! No one can really relate to what I am going through better than someone who is in the same situation. I had my TT in July 09, Radiation of 163 millicuries in Nov 09. I have multifocal papillary carcinoma. I was told that I will have to have the radiation at least one more time perhaps even a third time.....Oh the joys of cancer!

    I have had other health issues transpire since being diagnosed with cancer.......a trickle effect I suppose ;) Dealing with one day at a time and today seems to be an emotional one! I have gained quite a bit of weight and I am not too happy about that not because of outter appearance but not comfortable in my own skin right now. The Endo said this may happen but now that it has:(

    Hope to talk with you again and updates on your journey.

    Your New Friend
    Adrian

    I can always use more friends!
    Thanks for being one of my new friends Adrian!! I appreciate it! Today is an ok day. Going to spend it with my daughter since she has a day off school.
  • sandykr
    sandykr Member Posts: 57
    #9
    YolieC09 said:

    Hi there...I was wondering
    Hi there...I was wondering if you are hoarse from your surgery. I had mine removed 1/14/10 and I still have not regained my normal voice. I go tomorrow to take the RAI pill. Like you you my tumor was small and no lymp nodes were involved (I hope)..The surgeon wanted the RAI done just to make sure everything possible is being done. I am 62 and when I was told I had cancer, I was in shock. The doctor assures me that I will live a very long time. It took me a little while to get through the emotional part. Every once in a while when I am taking a shower the water works (tears) start. However, I start to think of my boss. She has lung cancer and in the 8 years since being diagnosed she has maybe had a year where she has had not to do chemo. So when I start to feel sorry for myself I think of her. Yes I have cancer but thank God I do not need chemo or radiation. Hang in there...It is also nice to know you have others in the same boat with you at least for me it is.

    Hoarse throat
    yes yes, I am 3 months after a completion thyroidectomy (first surgery was in Sept) and I'm still not pleased with my voice. It is still a strain to talk sometimes, difficult to yell, and last but not least...........I can't sing! I only sang in the car, but I can't yet do that!

    I am waiting, I have been assured that my vocal cords are working fine, so I suppose its just a matter of time.

    Sandy
  • usljh10
    usljh10 Member Posts: 85 Member
    #10
    weberdns said:

    I can always use more friends!
    Thanks for being one of my new friends Adrian!! I appreciate it! Today is an ok day. Going to spend it with my daughter since she has a day off school.

    Hi Weberdns
    My cancer was found in 2008 by my GP by feeling of my throat.I didn't have any symtoms,the fine needle was inconclusive,the ultrasound showed nodules.I had 2 surgeries, the 1st one was to find out if it was cancerous and because size. The second surgery was about 2 weeks later.(papillary) The rai(150mci)treatment(about 6 weeks after) the low iodine diet sorta stinks, but there are cookbooks on the thy.ca site that will help.My wbs wasn't done till a year later w/2 thyrodgen shots)no lid. with a rai of .5mci.It was clean. Thank the lord. I feel pretty good these days. No problems with anything. I'm also 49 years old. The main thing is to educate yourself. The shock of having cancer is what I think scare me the most.When I read up on everything and saw that my Doctors were following the correct procedures I wasn't scare anymore. Find yourself a good ENDO. Get ready for labs often.Be positive. I pray a lot too!
    Lisa
  • usljh10
    usljh10 Member Posts: 85 Member
    #11
    sandykr said:

    Hoarse throat
    yes yes, I am 3 months after a completion thyroidectomy (first surgery was in Sept) and I'm still not pleased with my voice. It is still a strain to talk sometimes, difficult to yell, and last but not least...........I can't sing! I only sang in the car, but I can't yet do that!

    I am waiting, I have been assured that my vocal cords are working fine, so I suppose its just a matter of time.

    Sandy

    Hi Sandy & Yolie,
    well I don't want to discourage at all. And everybody is different. My throat still gets a frog in it. I clear it all the time.I notice it a lot when I'm trying to carry on a conversation with someone.My voice will completely go out.I called my Endo, he did a ultrasound last month and nothing showed up. I guess it will just be that way from here on out. My voice is rough/hourse sounding.It's not as strong and clear as it was, but I can live with it. I like to sing at chruch and I don't sing as much because if I use it very much the frogs and clearing more. Of course some would say it's because I use to smoke.(11 years ago) My endo want's me to go to a ear nose and throat specialist. As long as I know nothing is going on with the cancer, I'm happy. Good luck to you both!
    2008 cancer
    Lisa
  • weberdns
    weberdns Member Posts: 154
    #12
    usljh10 said:

    Hi Weberdns
    My cancer was found in 2008 by my GP by feeling of my throat.I didn't have any symtoms,the fine needle was inconclusive,the ultrasound showed nodules.I had 2 surgeries, the 1st one was to find out if it was cancerous and because size. The second surgery was about 2 weeks later.(papillary) The rai(150mci)treatment(about 6 weeks after) the low iodine diet sorta stinks, but there are cookbooks on the thy.ca site that will help.My wbs wasn't done till a year later w/2 thyrodgen shots)no lid. with a rai of .5mci.It was clean. Thank the lord. I feel pretty good these days. No problems with anything. I'm also 49 years old. The main thing is to educate yourself. The shock of having cancer is what I think scare me the most.When I read up on everything and saw that my Doctors were following the correct procedures I wasn't scare anymore. Find yourself a good ENDO. Get ready for labs often.Be positive. I pray a lot too!
    Lisa

    Hi Lisa!
    Thanks for the information and the support! I have a wonderful Endo.....in fact when she was a starting resident I brok her in! Right now I hate the wait time between things.....Prayer sounds good....been doing this a lot lately. I have been reading a lot and since I used to be an oncology nurse I do have the ability to understand a lot of the medical texts out there.
    Sue
  • dubby88
    dubby88 Member Posts: 15
    #13
    YolieC09 said:

    Hi there...I was wondering
    Hi there...I was wondering if you are hoarse from your surgery. I had mine removed 1/14/10 and I still have not regained my normal voice. I go tomorrow to take the RAI pill. Like you you my tumor was small and no lymp nodes were involved (I hope)..The surgeon wanted the RAI done just to make sure everything possible is being done. I am 62 and when I was told I had cancer, I was in shock. The doctor assures me that I will live a very long time. It took me a little while to get through the emotional part. Every once in a while when I am taking a shower the water works (tears) start. However, I start to think of my boss. She has lung cancer and in the 8 years since being diagnosed she has maybe had a year where she has had not to do chemo. So when I start to feel sorry for myself I think of her. Yes I have cancer but thank God I do not need chemo or radiation. Hang in there...It is also nice to know you have others in the same boat with you at least for me it is.

    Voice is fine but still have a problem swallowing.
    I still have to chase my food down with something to drink. That seems to be my only problem since surgery. My doctor says I dont have to have the RAI at this time because it was under the 1.5 cm. She said I would have to have a scan in about six months to see if there is any change. I'm glad I didnt have to go on that diet, but the ACS has a pretty good cookbook on line. Thae only bad thing is everything has to be fresh foods. You even have to make your own stock to cook with.

    I understand the fear I have it also, I'm afraid I will delvelop cancer somewhere else in my body. I lost my sister-in law to cancer nine years ago.
    Thanks for being here so we can vent.

    Donna
  • usljh10
    usljh10 Member Posts: 85 Member
    #14
    weberdns said:

    Hi Lisa!
    Thanks for the information and the support! I have a wonderful Endo.....in fact when she was a starting resident I brok her in! Right now I hate the wait time between things.....Prayer sounds good....been doing this a lot lately. I have been reading a lot and since I used to be an oncology nurse I do have the ability to understand a lot of the medical texts out there.
    Sue

    Get copies
    Get copies of your labs. Everytime I go to the Endo I have them make me copies of my lab work so I can see for myself what the hormones are doing. Most of the time I can tell just by the way I feel if they need adjusting. Right now they have me on 112.Hang in there!
    Lisa

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